This will be a quicky. I apologize for being slow at updating from the appointment yesterday. Liviana and Giovanni both have been confirmed, through sulfatides in the urine to have Metachromatic Leukodystrophy, Infantile onset. Giovanni is pre-symptomatic and is hopefully a candidate for either bone marrow transplant, umbilical stem cell transplant or gene therapy. We have a lot of thinking and agonizing to do over the holiday weekend before beginning his journey this week with Doctor appointments and an MRI. I guess this will become Liviana and Giovanni's journey. God bless my babies.
I am getting ready to make cookies with Aria and Miles for Santa :). Liviana is watching Calliou which is her new favorite past time. She is not like Livi anymore which is so indescribably heartbreaking. She is drooling a lot and I bought her a cute bib the other day...she must even have cute bibs :). Her temper is not her. She is agitated easily and the other day when we were going to take her shopping after her occupational therapy appointment she was so upset and screaming so much in the car that we had to go home. That is not our Liviana...those are the hard things to take.
Giovanni...he is a wild man. He is my sweet, crazy boy who is terrorizing the house and eating everything in sight as he can. Gosh...if you could meet these kids...all four of them! He has a curl starting in the back (which is pretty much the only spot with hair) so imagine that sweet face, his blue eyes and light, curly hair.
I have to run. I apologize for being brief. You will get sick of me soon with all my postings about all we have to overcome, face and deal with. I love you all for your support! I can't say that enough. He is taking steps here and there but not walking. He is speed demon at crawling so I figure he doesn't see the benefit just yet. I promise to get photos of them all up soon from the amazing Jen Pinkerton :).
Love to you all. I am living in the moment and I wish you all an amazing Christmas of hugs, love, smiles, health and peace. Hug your babies!
Amy
Spinal Fusion Revision
1 month ago
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4 comments:
our thoughts and prayers are with you all as you try to deal with this devastating diagnosis. your children are beautiful and it's so hard to comprehend why such awful things happen in life. we are so sorry and pray that you can find strength and comfort to help you go forward.
Joanne and John Michael (R-CDH 3/11/07)
our prayers are with you always. i so wish i could meet your beautiful family! you are an incredible mom, they are blessed to have you, as you are to have them. hopefully you can figure out the next steps to take and things can get going with some progress. it breaks my heart to hear livi, isnt herself. im so sorry amy.
I am so sorry Livi is not like her anymore, I am keeping you all in my thoughts and prayers Amy!
Love,
Fer
Amy, my thoughts and prayers are with you all, as always. I think of you so much and have told so many people about your family. All I can say is that I am here to lend an ear if you need it. I hug my babies tight every day and think of you and your family. Much love from us to you!
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